Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Tubes in, no cries, never signs of any discomfort. The nurses all loved him and even the ENT kept saying how cute he was. That’s our boy! Almost one week later and we swear he is repeating us more often. The child talks, just no one knows what he is saying. I’m sure it’ll all come. I’m not running for a speech eval yet. Just gonna see if it just happens. I’m thinking the tubes are gonna make a huge difference.
He is doing amazing in ISR (survival swim) I just can’t believe this summer he will be swimming. He is only 2!
I followed up with the geneticists and Lily’s labs were all good but the EKG was inconclusive because she was moving too much, Andrew said no way he was holding her down and she was not moving. It doesn’t matter because I still have to bring her in on Thursday to take it again. Friday neuro surgeons office called me back to tell me that someone will be calling me on Monday (today) to finally schedule the VNS surgery. But we still have to wait 2 weeks after the surgery to turn the thing on. She is still really having a hard time with seizures. On Wednesday we were at horse therapy and she just wasn’t acting herself. Really floppy, tired, not her usual self on the horse so I said let’s stop, I take her off, load her up in the van and just minutes later she goes into a really big bad seizure and I just said thank you God she wasn’t on the horse. Man…. you gotta trust your gut with your kids. There is me and her therapist on both sides of her, but those type of seizures are hard and I don’t know, and I don’t wanna know how we would have handled that situation. My Lily. Why is it always so rough for her? I mean seriously. She loves the horse. And now I am feeling like maybe we should stop while she is so unpredictable and uncontrolled. It’s frustrating to love someone with every piece of your soul and watch her go through something you have absolutely no control over. And I have tried. Believe me I have tried to have control over these seizures, but it is the demon that we can never beat.
We had such a great weekend spending time with amazing friends on Saturday and my wonderful family yesterday on Easter and the evening had to end abruptly because Lily was just screaming. We have no idea why but just screaming. It is so sad to not know what is going on in her sweet little brain. My Lily girl.
It’s funny the other day Andrew might have suggested that Oliver is my favorite and I had to laugh. Because as us mom’s know no child is our favorite. But we can have favorite parts of each kid and I will stand by that until the day I die.
Andi is like a best friend. She is the one I love to shop with, I love seeing movies with her. I love just going out to eat with her. I love her heart and her spirit. I think she and I will always have a unique bond that I pray always keeps us close. I see Andi as a savior in a lot of ways. She is the only child we absolutely did not plan for. She came when I was scared to death to have another child. But when she came she said “Look out! I am here!” and my world became brighter. I was in such a dark place with Lily, so sad, so lost, so unforgiving for given a child so medically fragile and then boom this bright light blinded us and I became enamoured by her. She is everything I wish I am, speaks her mind, loves openly, admits when she is hurt and expects wrongs to be right. I inly see bright for her future and love to be with her every step of the way.
Oliver. Well he is my baby. I so wanted him. He cuddles me. He loves everyone, but I know he has a place in his heart just for me. His blond locks frame his face so perfectly and his hazel eyes that I have never known before just melt my heart. His quick smile, his ability to make a roomful of people laugh and not be able to say one word makes me breathless. He steals my heart every moment he can. He is laid back like his mama and I imagine he will be the peace maker as well.
And Lily. My first baby. Will always be my baby. The one who catapulted me into motherhood in fast forward. Yes we all experience sleepless nights, but not everyone spends those sleepless nights in and out of hospitals. She taught me motherhood can break your heart and mend your heart in a matter of minutes. She and I will always be who we were the day we met. She will always be my baby. My tenderness. My achy heart. I call her my Achilles heel and I mean that in the kindest way possible. She will always be my weakness in my strength. She is like hair to Sampson. With her I am strong but she also makes me weak. Does that even make sense? My world changed the day she was born and she will always be who made me the person I like so much more.
So no one is my favorite. If they were all drowning and I couldn’t save them all I’d just drown right along with them. They are the air I breathe and loving them makes me remember God’s grace and mercy.

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